Epidermolysis Bullosa Info & Awareness
Originally posted by Silvia on her blog: http://blog.silviaskingdom.com/?p=852 When you know more than the real doctors do about your child. When you consider internet friends you’ve never met to be some of your best friends. When you think it’s a good day if you don’t see any blood. When you get asked at least once a week…
What do you do when your child with EB becomes a teenager with EB and starts asking you the really hard questions about life? When my son was small I could gloss over the answers with a positive saying or a humorous comment. Not so as he becomes a young man and wants real answers…
From the book “Living with Epidermolysis Bullosa” (ONLY $2.99 for the Kindle!) This story was written in early 2007. Nicky is now nearly 16 (his birthday is in late November). Follow Nicky’s Caringbridge Blog at http://www.caringbridge.org/visit/nickyz (you need to log in to view it, but it’s free). A Journey Into Motherhood By Silvia C. silviaskingdom.com California, USA…
It seems as if all people see, when they come in contact with a child with EB, is gauze. Some wonder if the patient has been into an accident or a fire, others fear it’s contagious: “what happened?” is a common question tossed around, but most just look dumbfounded, not being able to formulate a thought…
By Emily Spurrier From her Blog: Dys-Located This is the sixth and final entry in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Earlier in life, I had envisioned myself having three children. I always said that the first would be a boy, the second, a girl… and the third…
By Emily Spurrier From her Blog: Dys-Located This is the fifth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Following the demise of my first serious relationship, I figured honesty was still the best policy with those I had dated. With the first potentiality, however, intimacy was not an…
By Emily Spurrier From her Blog: Dys-Located This is the fourth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education…
When we found out we were pregnant we were so excited, we had been trying for 6 months. After a typical 9 months of a perfectly normal pregnancy, I gave birth to a beautiful 7lb baby boy which we named Gabriel, after the Angel in God’s Army. Little did we know what a soldier we…
By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from December 10, 2006) A couple of weeks ago my son turned ten years old and it felt like a gigantic milestone. For the first time in years the image of him in the incubator when he was a baby kept haunting me and my dreams. Why did I…
By Emily Spurrier From her Blog: Dys-Located This is the third in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** My mother turned 28 on October 25, 1974. On that same day, she received a phone call advising her that her one-week-old infant would only live for…
